Meet Zoe as she express the hardship, she is faced with daily dealing with Interstitial Cystitis. Each and everyone of us is affected by the same illness and we can all relate with pain and symptoms, but each person's side of the story will always be different and unique in each and every way.
|Zoe (Right) & Tony Bergeron|
I worked full time as a licensed cosmetologist and I also worked out in the gym 5 days a week. I have one son (his name is Justin) and he and his wife have blessed me and my husband with 4 amazing granddaughters. We also have 4 other grand children from my husband’s side. They are all such a joy!
One day I had my semiannual GYN appointment and got this news. Dr. said that I had several very large fibroid tumors in my uterus and a total hysterectomy was suggested. Beings I was past the age of child bearing (at least in my thinking) I decided to go through with the surgery. I went back to my GYN after having done all of the blood work to sign consent forms. It was advised to me that I should also have my ovaries removed since I had already had two prior surgeries to remove cysts on and in them. I signed the papers. Little did I know that this surgery would be the end of life as I knew it?
Surgery morning came (this was 22 years ago) I was admitted and my Dr. came in to speak with me before the surgery. We went over a few things but we obviously did not discuss the fact that I had signed papers at his suggestion to also remove my ovaries at the time of surgery.
I woke up from surgery in severe pain. I remember the nurses having to give me oxygen and turning me on my left side because my blood pressure was dropping rapidly. After I was stabilized my GYN came in to say that he had had a very hard time performing the hysterectomy via laparoscopic since the fibroid tumors were much larger than he had anticipated. He said all in all it went well but he admitted to me that he should have performed the surgery the old fashioned way by cutting my lower belly. He then said your ovaries looked ok so I left them in.......WAIT WHAT DID HE JUST SAY! I reminded him that he was the one who suggested they come out. He seemed confused but later that evening while lying in my hospital room he came to me and said that it was his mistake and he had found the signed papers in my chart agreeing to have the ovaries removed.
The next several months would set the scene for something I never in my wildest dreams thought I'd hear.
Immediately after surgery I developed a severe infection that the Dr's could not get a handle on. It was a vaginal infection and it became so bad and wasn't responding to treatment that they ordered a CT with contrast to see if maybe there was a surgical sponge or instrument that had been left inside of me. The CT indicated that nothing of the sort was left behind but that still did not explain this infection that was not responding to treatment. I was given a round of antibiotics that I had to insert vaginally (it was a cream). My Dr. Left to go on vacation and his assistant saw me and he prescribed yet another round of the same vaginal cream. After using the second round I saw my original Dr would have performed my surgery and he was very angry that his partner had prescribed another round of cream to be inserted into my vagina.
My doctor had to literally scrape every bit of that medication out of me because it had formed a cork and solidified in my vaginal wall. After all of this was cleaned up and finally cleared up (three month duration) I was left with what I thought was a severe and chronic UTI. I was given antibiotics for weeks. Then they said the infection is clear and I should go home and drink lots of fluids including cranberry juice.
After chronic severe burning and running to the toilet every 15 minutes and no one taking me serious after 2 years I began to research on my own. I read about Interstitial Cystitis and went to my GYN with this discovery. He made an appointment for me with an Urologist here in my hometown of Houma, Louisiana.
The URO first started out with several other tests but eventually a cystoscope was ordered AND WALA.....diagnosis read severe chronic Interstitial Cystitis with Hunner's lesions and hundreds of pinpoint hemorrhages. Finally a diagnosis I thought. Now let's gets some meds to treat this mess and I'll be on my way.
Not so fast....fast forward 20 years. I am now 58 years of age this February and I am sicker now and in more pain than I have ever been in. My former life is a mere vapor compared to what my life is like now.
I have tried every Western treatment known to man and have probably given every supplement I've read about at least a fair shot at helping me. I've had surgeries, changed my diet greatly, and done the illumination diet and more concoctions that I even care to admit.
This disease has ruined my life. I have to say I was hopeful the first several years because I kept thinking "surely this will go away", "something will eventually work"
Well it didn't and it hasn't. There are many days that I cry off and on all day and then there are days that I'm just so mad that I scream. It's a physical and emotional roller coaster.
I'm in a Face book support group called "The raw reality of Interstitial Cystitis" and in this group I have met some amazing women. We draw strength from one another. We advocate by bringing in new research and ideas and we all share in each other's grief, pain, failures and successes. I don't know what I'd do without these amazing women.
The biggest help for me personally are the many videos that some of the women including myself have done. It really gives anyone who sees these videos a very real look at just what we go through day in and day out.
I often ask myself how is it that Dr's can put a pig valve into a human body and it work just fine. I'm guessing this is one of the toughest areas if the Hunan body to successfully treat. There are no new medications out nor have there been any in 30 years. The treatments are tired and ineffective and in many cases (in my case) have only made matters worse,
Although we may not see a cure for Interstitial Cystitis in my lifetime, I am praying that eventually there will be one. A way to restore to so many good people the years the enemy has stolen.
Until then.....Keep praying, Keep hoping and Keep Advocating
More stories coming soon...
" Bladder Me Crazy" Interstitial Cystitis,
Until next post... Stay strong, keep fighting, and never give up!